Neive's Story...

Neive Louvaine Warwick was 5 years old and had just started Year 1 when she was diagnosed with High-risk Embryonal Parameningeal Fusion negative Rhabdomyosarcoma. She was an energetic, active, happy go lucky little girl, prior to this and had never stepped foot in a hospital since she was born. In late August 2022 she started having disturbed nights initially which then progressed to headaches, a squint, subtle facial palsy’s and generally just not being herself.

After 3 weeks of agonising back and forth visits to the GP and local hospital, they finally agreed to perform an MRI of her brain as we felt she was displaying signs of a brain tumour. Prior to this we were told it was a water infection, growing pains etc. Neive’s tumour was discovered during the MRI, a 5cm tumour. It wasn’t in her brain but in the Pterygopalatine Fossa area with intracranial extension and deemed inoperable because of its complex location. That’s the moment her and our lives changed forever.

Neive went on to have 9 rounds of IVA chemotherapy at Birmingham Childrens Hospital on the FaR RMS trial and then 6 weeks of Proton Beam Therapy at The Christie in Manchester. She tolerated this reasonably well despite the toxicity and painful skin reaction to the protons. Her strength and determination was admirable during this period and her will to live shone through brighter than anything. She even found the energy to enjoy the hotel treadmill and karaoke machine in the hospital. Neive’s appetite was severely affected and she relied solely on her NG tube for nutrition. Although this time was challenging we also had some of our most treasured memories as a family in Manchester.

Neive’s end of intensive treatment scans in March 2023 were clear other than some residual tissue which they assured us was common. She commenced maintenance chemotherapy in April 2023 combining oral Cyclophosphamide and IV Vinorelbeine. This had some challenges and caused her blood count to drop lower than expected, she had to have the dose reduced but after this hiccup life resumed for her. We enjoyed family holidays, theme parks trips, open mic sessions, Neive’s birthday party, trips to West Midlands safari park, Drayton Manor & Blackpool. Neive also returned to school for longer days and went to lots of parties. Her beloved hair started to grow back which Neive was delighted about and she took her hat off for the first time in months.

It was in June 2023 that things took a turn for the worse for Neive. She became unwell and generally not herself and started to display symptoms that she presented with upon her diagnosis. She began having severe headaches accompanied by nausea and vomiting, disturbed nights and was withdrawn from everything she used to love doing. This went on for a few weeks and after numerous visits back and forth to Oncology, they decided to perform a lumbar puncture as they feared Neive may be relapsing. The lumbar puncture provided immediate relief to Neive’s paralysing headaches and it was noted that her opening pressures were 54 – severely high. Her CSF testing came back clear of any cancer cells.

After a week, the headaches crept back in along with the nausea/vomiting and again she had a lumbar puncture performed to relieve the pressure. CSF was tested again and yet again, clear of any cancer cells. This went on for a few months, lumbar punctures typically every 10 days and gradually things getting worse more quickly. She was started on various medications to help reduce her CSF such as Acetizolomide and Furosemide all to no avail. We felt like we were going round in circles. Neive wasn’t getting any better and neither were the high intracranial pressures and symptoms. What was going on?

Eventually, they diagnosed Neive as having Idiopathic Intracranial Hypotension although she wasn’t typical as it predominantly affected middle aged, obese women. This didn’t sit right with me and I never truly believed that was what Neive was suffering with, there had to be a cause for such a slight little girl who was underweight to have such high pressure. Interestingly, an MRI Neive had in July 2023 showed dural enhancement of her brain and spine but this was believed to be down to the repeated lumbar puncture’s and not the presence of tumour.

As the weeks went on, Neive continued to decline and one evening in August 2023 she had 3 x seizure like fits in a row, it was then that the Neurosurgeons intervened and rushed her to theatre to have a ventriculoperitoneal shunt fitted to save her life and relieve her brain of the high pressure. We were pleased that finally she may be able to return to some sort of normality and be free of the constant headaches and vomiting which couldn’t be controlled. This wasn’t the case. Although the headaches were relieved the other symptoms persisted and she also developed a squint, double vision along with left sided facial weakness (all the symptoms she presented with upon her diagnosis.) We were baffled as to what was causing this (although I had my suspicions, sadly) as all the testing of her CSF had come back clear of tumour along with MRI scans with the exception of the dural enhancement.

Sadly, Neive’s end of treatment scan in September 2023 showed widespread Leptomeningeal disease of her Rhabdomyosarcoma. The high pressure was due to this all along and the cancer had returned aggressively. Her primary tumour site remained stable.

✨There were no curative treatment options left for Neive and we took her home on palliative care surrounded by everyone and everything she loved in life. We enjoyed time at one of Neive’s favourite places; the trampoline park, we hired a hot tub for the weekend in our garden, we enjoyed watching Neive’s favourite films; BFG, Minions, Christmas Chronicles, Mr Beans Holiday and Benidorm. We sang and danced on Neive’s beloved microphone to her favourite songs: Summer of 69, Don’t you want me baby and Stand by me. We cuddled (cutched up as Neive would say) we had snacks in bed and read lots of books. She went to Jephson Gardens to feed the ducks for one last time, this was one of Neive’s favourite things to do and also went to the library to use the computer, another favourite thing to do.✨

✨As the weeks went on Neive began to deteriorate and fell into a deep peaceful sleep. Neive felt the warm sunshine shine on her through the window for the last time in late October and on 24th October 2023 at 7.07pm Neive was set free from this terrible disease and drifted off peacefully to heaven with her Mum lay next to her holding her hand gently whispering that she would see her beloved pet dogs Bailey & Billy again along with her best mate, grandad Tim and how she will have her beautiful plaited hair back again. Neive is at peace now and her soul can rest. We will love you, talk about you, celebrate you and miss you every second for the rest of our lives.✨

“Nu night diddly doo, I love you, god bless you.”💫🌙

Matthew 19:14 “Jesus said, let the little children come to me and do not hinder them for the kingdom of heaven belongs to such as these.

💜Neive’s Arc logo represents a love Neive and our family had for blackberry picking. From a young age, Neive would spend time with me and her Grandad Tim picking blackberries in our garden and at the meadow. She would love to then help make an apple & blackberry crumble with her Nanny Shirley and couldn’t wait to dish everyone a bowl of what she had picked. Neive loved picking the blackberries so much so that she named herself and me (Mum) “The Blackberry Sisters ” and it stuck. Whenever I walk past a blackberry bush now I think of Neive and all the happy summer days we spent in the outdoors enjoying picking the juiciest blackberries. “Blackberry sisters forever”.💜

🟡What was our cancer journey like?

Throughout Neive’s journey she fought valiantly, courageously and never complained nor seemed phased by any of all she had to endure. Cancer destroyed everything in our lives and we quickly had to adapt to a new way of living. Fear became a familiar emotion. We struggled to adapt to living in the hospital but the one thing that got us through was having family and friends around who supported us but most of all hope. Neive gave us hope every single day. She truly was a magical ray of sunshine in our lives despite the cruel hand she was dealt in life. Neive became a big sister to Molly in January 2023 and she taught Molly so much in such a short space of time, she assured her she would always take care of her, she would rock her in her arms, write notes to her, feed her and talk to her lovingly. Neive was besotted. We can see Neive’s light and love within Molly now and feel certain she is guiding her and living on through her little sister. Neive has sang, danced and laughed her way through treatment but most of all she continued to love life despite its hardships. Neive carried us all through the darkest of times, she kept us going, she gave us hope and we will honour her courageous quest for the rest of our lives. We’ll never falter in our quest against childhood cancer, in memory of her. Neive will be remembered for her love of animals, flowers, her beautiful singing voice, her perfect face, her lovely plaited hair she was so fond of, her kindness to all, her magical imagination, her love for her family and her drawings she so enjoyed doing which now sit framed on the walls all around her home. We loved her, protected her, we sang and we danced right up until the very end. We shall carry the pain, trauma and ever consuming sadness for the rest of our lives but we’ll also carry the legacy of a very special little girl called Neive .

🟡What changes would we like to see in the future?

From June 2023 – Sep 2023 Neive was displaying signs of a leptomemingeal relapse but all the attempts to discover this pathologically came back clear (Lumbar punctures/CT/MRI/blood work). Her MRI’s were clear and CSF findings clear other than the noted high intracranial pressure (54).

Neive displayed these signs for months, her symptoms weren’t managed and she lived miserably a lot of the time back and forth to oncology because something “Wasn't quite right”.

By the time the Leptomemingeal disease relapse did present itself on an MRI in Sep 2023 we were 4 months in to these symptoms and what was offered at that point to manage her symptoms (not a curative option) was too late as the damage had already been done to Neive we felt. She had still been given weeks to live whether we went ahead with this option or not. Putting her through another operation to have an Ommaya Reservoir fitted and then spend a lot more time in hospital when she had endured these symptoms for 4 months already felt wrong. We took Neive home with adequate pain relief (finally) and allowed her to just be, allowed her to lay in in the mornings and assured her there were to be no more hospitals. We would all be together at home from now on. Neive knew nothing about what was happening, she knew some people got better and some people didn’t. We carried all the fear, anxiety, worry and anguish. Neive carried nothing but the weight of our love and the reassurance that we were there and together.

Through researching Leptomeningeal disease myself I have found it can be tricky to diagnose/pin point but a combination of persisting symptoms alone should be enough to treat for it. If this had of been the case then Neive would have regained some quality of life instead of living the way she had in so much pain and discomfort.

Leptomeningeal disease seems to be a common location for relpase in children with HR Parameningeal tumours. Should intrathecal Chemotherapy be administered during frontline treatment as standard? Could this prevent cancer cells sneaking across the blood/brain barrier? Should intrathecal Chemotherapy be administered if symptoms present and persist/worsen even if Lumbar puncture/MRI results are negative? Why was Neive denied that quality of life? Why hasn’t this been researched and acknowledged with so many children relapsing in this location?

I would like to see more curative options available for children at the point of relapse in any location with particular research into why relapse occurs and having the knowledge to tackle it more effectively for the long term and improve quality of life/outcomes for our beloved children.

Childhood cancer isn’t rare in my eyes. It’s severely underfunded and under acknowledged. Through Alice’s Arc and Neive’s Arc we have gained a platform to advocate for others and to share our experiences and views on all we have endured. We have also been gifted the ability to fundraise and enable vital research projects into RMS to go ahead and hopefully one day find a cure. It’s too late for Neive but I’ll continue to fight for your children, in Neive’s honour.

🩷✨ᵂᵉ ˢᵉᵉ ᵗʰⁱⁿᵍˢ ᵗʰᵉʸ’ˡˡ ⁿᵉᵛᵉʳ ˢᵉᵉ, ʸᵒᵘ ᵃⁿᵈ ᴵ ᵃʳᵉ ᵍᵒⁿⁿᵃ’ ˡⁱᵛᵉ ᶠᵒʳᵉᵛᵉʳ✨🩷